Seeking out support from other adults or parents of children with congenital heart disease can help keep you from feeling isolated. There are many people going through many of the same things you may be experiencing:
- navigating different medical offices
- working to understand diseases and procedures
- keeping detailed medical records
- striving to stay on top of appointments and medication schedules
- trying to live a normal life amidst the challenges
Programs throughout the United States offer opportunities for children and adults with congenital heart disease to meet and share experiences. Increasingly, families can find support through online forums and informational websites (such as this one).